I still remember the day that the audiologist told my husband and I that our perfect 6 week old baby was profoundly deaf. The whole world stopped. We were flung out of the familiar solar system where the big challenge was getting your baby into a manageable routine and we were flung into a whole ‘nother world that revolved around the next medical appointment, the next hearing test, the next set of hearing aids, the next set of results.
Thirteen years later, I can look back with a smile and sigh. I can see how far our family has journeyed from the diagnosis to now. I can reflect on God’s goodness to our family in providing for our needs, I can testify to God’s tender shepherding and his ability to fulfil his kingdom purposes in spite of the challenges our family faced. (Take a look at John 9!)
So what I have learned after 13 years as the mum of a child with a disability?
1) God is in control – God knew my baby when he was created in my womb and God loves my child. God doesn’t make mistakes. I can trust in God to provide for our needs.
2) Stop comparing your child to the kids around them – You will drive yourself crazy comparing your child to other children of the same age. Every child develops at their own rate, even without the presence of a disability. Comparing your child to the kid they sit next to at school is not going to make any difference to the progress your child makes. All it does is make you more anxious – and that is going to negatively impact your child.
3 Ask for help – There are case workers, therapists and agencies whose primary task is to do whatever they can to support your child. Start by contacting the organisation set up to support children ‘just like yours’, for us it was the Deaf Society and the Royal Institute for the Deaf and Blind. They were a wealth of information and support to us and got us going on our ‘hearing journey’. It may also be worth getting a mental health care plan from your GP and arranging for some counselling sessions for yourself to help you get into the right frame of mind as you support your child, and the rest of your family, to come to terms with their diagnosis.
4 Go easy on the therapies – NDIS is fabulous! It makes specialist therapy services, such as psychology, occupational therapy etc affordable for Aussie families. Problem is, there are so many therapists we could send our child too, that we are at risk of wearing ourselves and our children out racing from appointment to appointment. My advice is to choose two therapists that you see as most beneficial for your child for this year and review your therapy choices at the beginning of each year.
5 Chat to your school – Provide your child’s teacher with a one page summary of your child’s disability and how it may impact their learning. Provide the teacher with some handy tips of things that you do at home to support your child e.g. use of a timer, favourite toy, special interests etc. Contact the Education Support coordinator at your school and ask for a meeting that includes the classroom teacher, any therapists your child is seeing and you and a support person/partner. Transparency and a regular exchange of information between school, home and therapists ensures everyone is ‘on the same page’ and working toward the same goals for your child.
6 Focus on the progress not the target – For many children with a disability, they will reach milestones and learning goals at a different rate to their peers. Instead of looking at what they have scored on a test or what report grades they have got, look at how much they have grown as a learner in the past 6 months. If you’re feeling discouraged, make an appointment with your child’s teacher and ask them to show you where your child was at the beginning of the year compared to now. Focus on the progress.
7 Remember that there is more to you than your role as a parent – It can be so easy focus our entire identity on our role as the ‘parent of a child with autism/blindness/upper limb difference/dyslexia’. Remember how you saw yourself before your child was diagnosed. Don’t forget your family, your friends, your church, your hobbies. It is these things that will actually keep you balanced on those hard days when you are feeling overwhelmed with worry for your child. Don’t exchange who you are for your child’s diagnosis.
8 Pray – God knows our needs and he knows what our children need. He loves our children more than we do and desires for them to be in a relationship with Him. Pray that God will draw our children to Him and that our children will find their hope and security in Jesus.